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1. Welcome - 5 minutes
- Facilitator greets participants as they arrive. Welcome them to the 5th week in the program.
2. Review of Week - 10 minutes
- Participants can be encouraged to share an experience from the past week. Facilitator can refer to last week's workshop: Losses As We Age, and invite participants to share their thoughts on the application of the techniques.
3. Introduction to Topic - 5 minutes
- Workshop 5 focuses on the unique aspects of caring for a person who has dementia. Caregivers are particularly challenged as the person they are caring for will change a great deal over the course of the disease. Caregivers need to understand some of the changes that occur with dementia and accept the need to look after their own health.
4. Presentation - 55 minutes
(see #5 after presentation)
- Caring for Someone with Dementia
Presentation
Workshop Five - Caring for Someone with Dementia
Introduction
What is Dementia?
What is dementia? Brainstorm with participants; record ideas on flip chart. Definition: Dementia refers to a group of diseases characterized by a progressive and usually irreversible decline of mental function (NACA, 1996). Symptoms of dementia include: memory loss, changes in mood, inappropriate social behaviour (such as wandering or aggression), cognitive decline and disorientation. There are a number of factors that can cause symptoms that mimic dementia but if the factors are addressed, the symptoms may, in fact, be reversible. These factors include, but are not limited to:
- Medication interactions or side effects
- Grief
- Sensory Deprivation
- Infections (particularly pneumonia or urinary tract infections)
- Underlying organic disease
Malnutrition
The most common type of dementia is Alzheimer disease. Some other types of dementia include: Vascular dementia, mixed dementia, dementia with Lewy bodies, Creutzfeldt-Jakob disease, dementia with AIDS, dementia with Parkinson's disease and alcohol-related dementia. The symptoms of dementia may begin gradually and may be difficult to pinpoint; however, as the disease progresses, symptoms become much more pronounced. As well, symptoms and behaviour are not necessarily consistent from day-to-day or week to week. An easy to administer test called the Folstein Mini-Mental State Examination (MMSE) is often the first step in assessing the patient and/or family's concerns about the possible presence of dementia (can be conducted in a family doctor's office). This test offers a useful screening for cognitive impairment. The thirty items screen for orientation, attention, memory, language, and visuospatial function and can be completed in under five minutes (Rockwood & MacKnight, 2001:64). Even as the disease progresses, people can have "good" moments/hours/days - periods when they are more lucid and aware. They may be able to summon remaining social skills to function fairly well in a given situation for short periods of time. An example of this is when someone lives nearby a parent and notices the small changes in function and ability. When a sibling from "out-of-town" comes to visit, the changes may not be as evident to them. Conversely, when someone is very close, they may not observe gradual changes in the same way as someone who only visits periodically and sees significant change. Having someone with dementia in the family is a challenge for everyone as each person has a different perception of the abilities, extent of the disease process, and course of action for treatment - at least in the early stages. In the later stages, families often need to consider placement for care. When families are not in agreement about the options at this stage, it can create a great deal of stress and anxiety. Dementia has a social reality as well as a biological reality but has traditionally been managed by a medical model of care (Vittoria, A.K. (1998). "Preserving Selves", Research on Aging 20(1), 92). The disease affects all members of a family and thus, the response needs to involve family and friends. The prevalence of dementia increases with age. The Canadian Study on Health and Aging (1994) estimates that 8% of persons over the age of 65 have dementia. This estimate can be described in age categories: the prevalence is 2.4% among persons aged 65-74 and 34.5% for those over 85. There is an inevitability of decline during the process of a disease that causes dementia. This creates the risk that, rather than focussing on the person, the focus becomes directed to the disease. People with dementia experience changes in their ability to communicate. As the disease progresses, the person may lose the ability to speak about their concerns, their pain and they may not even respond verbally at all.
Note: Facilitator can refer back to Module 3 (section on communicating with someone who has dementia). It is important for caregivers to seek information about the disease process to help them adjust to the changes they see in their relative. In the person with dementia, his/her world is increasingly becoming incomprehensible to him/her and s/he behaves according to perceptions. Caregivers need to be alert to cues that indicate discomfort, pain, fear, anger or frustration. Becoming alert to cues is an important strategy for identifying and defusing situations that result in major upsets. It may be helpful to keep a journal of your, and others', observations. Seeking professional help: It is important to seek medical help when changes in cognitive behaviour are observed in a person close to you. Rather than accept the changes as a "normal part of aging," caregivers need to question the origin of changes. It is possible for physicians to make very accurate diagnoses and to determine the origin of the symptoms so that reversible conditions are addressed quickly (such as medication interactions). In diseases which are irreversible at this time, such as Alzheimer Disease, there are new treatments available for symptoms of dementia. Early recognition and treatment can be a major factor in improving quality of life for the person and their family. Tips for Dementia Care (Adapted from Dr. Michael Gordon, Medical Post Oct. 03, 2000)
- Dressing and grooming:
Use pictures or labels on clothing drawers and closet doors to act as cues. Lay out clothes in the order in which they would be put on. Be flexible with personal care, changing bath times, for example, to a time of day when the person may be most receptive.
- Communication:
Approach the person slowly and from the front. Gently touch her/his arm or hand and make eye contact. Wait until s/he seems ready to listen before talking. Speak clearly, allowing time for the person to absorb the message. If instructions are being given - for example, brushing one's teeth - be sure that the activities are presented in small segments of information.
- Involvement in meaningful (to the person) activities:
Often, activities that were part of long established patterns - folding clothes, preparing vegetables, walking, quiet visiting - can be a way of maintaining a person's involvement and offering a sense of purpose. Creativity is important. Caregivers may ask the question: What was important to (person) in the past?
- Safe Environments in the home:
Caregivers need to visually review the environment to ensure safety. For example, the kitchen is often a room with lots of hazards. Unneeded electrical appliances can be moved or stored out of the person's reach. Stoves can be made safer through use of safety knobs or even removal of knobs.
- Managing medications:
If the person is having difficulty swallowing or is resisting taking the pills, you might have to try other ways of giving the medication, such as crushing the pills in jam or applesauce. Some medications might also come in liquid form (ask your pharmacist). It is important to store medications in a secure location.
- Responding to difficult behaviour:
A structured daily routine can be comforting and minimize surprises that engender anxiety and fear. It can help to enhance remaining skills in that people know what to expect. When people respond to their circumstances with behaviors that are upsetting to others, it is important to remain calm and reassuring. It is also important to understand that their response is not a deliberate attempt to anger you but rather, their own response to an environment that is increasingly becoming incomprehensible to them. Moving them to a quiet area, or changing the activity can help in calming the person.
- Cuing:
The caregiver can place notes and signs around the house to aid the person with dementia. For example, a sign on the bathroom may have a picture of a toilet. It is also helpful for people to identify themselves if there is any indication that the care receiver may not recognize them. It is not helpful - and in fact can be distressing - to ask the person with dementia "Do you remember me?" or to ask them to guess. The caregiver can offer information about location, the time of day, day of the week, the season, or the particular holiday.
- Validating feelings:
It is important to remember that when a person talks about past events, there are many feelings associated with those memories. It can be helpful to speak to the feelings. For example, if your elderly mother tells you that her own mother is coming to visit her this afternoon (and you know that her mother has died many years ago), you might ask her to tell you about some of the things she used to do with her mother (or her memories of her mother).
Some information about Alzheimer Disease - Alzheimer Disease versus Normal Aging
It is not uncommon for many people to confuse normal age related changes with the onset of Alzheimer disease. Not all memory lapses or mistakes in judgement are related to Alzheimer Disease or other dementias. In fact, only a small percentage of older adults develop dementia so it is always important to consider all possible causes when changes in cognitive behaviour are noted.
Note: Facilitator may refer back to Module 2 - Normal Aging. Some distinctions to consider are:
Forgetting a person's name but remembering it later is not a symptom of Alzheimer Disease. If an individual forgets the name and can't remember it even when told, or they don't recognize a person close to them (such as their spouse), it is cause for further investigation. Forgetting an activity is different from forgetting elements of the meaning associated with that activity. For example, someone may forget to eat breakfast but they still understand the context of eating meals within the day and will seek a meal when they are hungry. We've all gone into a room in search of something and have forgotten what we are looking for. This occurs often because we are distracted and are juggling many priorities or activities. When a person is older, these lapses in memory may make people wonder if there is significant mental decline occurring - when in most cases, it is simple memory lapse as for other age groups. However, there are signs that go beyond simple lapses that are "flags". For example, while it is not unusual for a person to go into a room and forget what they are looking for, if they go in a room in their own home and have no idea where they are, then that would be a signal that professional help needs to be sought. There are different stages of Alzheimer Disease: Mild, Moderate and Severe. Each stage has typical patterns of change and behaviour that can help the family, in consultation with a physician, plan for current and future care.
Patterns of Caregiving
Half of the persons with dementia live at home, most of them cared for by a family (or friend) caregiver. Admission to a care facility is now occurring in the later stages of the disease so that people are remaining home for much longer periods of time. This means that families are providing the bulk of the care well into the moderate to severe stages of the disease. It is well recognized that the demands on caregivers of persons with dementia are very heavy. Caregivers must make focussed efforts to look after their own health and well-being. They may seek respite services or take advantage of offers from other family members to help out. Perhaps hardest of all is asking for help. However, caring for yourself is not a luxury, it is essential in order to be able to sustain the role of caregiver.
5. Nutrition Break - 10 minutes
- Participants will have refreshments and share experiences with others.
6. Discussion of Presentation - 45 minutes
7. Evaluation of Workshop 5
- Participants are asked to complete evaluation forms and leave them in a designated area.
8. Closing Remarks - 10 minutes
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